Looking forward, not back.

This week marks 8 weeks since (give or take) since Chloe’s first open heart surgery. It seems like we all have lived a lifetime since New Years Eve, when she had it done. The scar is fading nicely and you wouldn’t know it to look at her that she even has a heart problem!

So it’s time to start counting the days til the next one, rather than counting the days since her first. Chloe had her first post operative review today with the cardiologist, Dr Ward. Was a crazy morning, though I was super organised and we were ready to go in plenty of time…only to get in the car and it wouldn’t start! Thank goodness my brother lives so close and hadn’t done his school run yet, he popped up and jump started the car and we got going.

A review includes an ECG, her SATs, blood pressure and respiratory rate. Also Dr Ward has a poke around her liver (an enlarged liver can be sign of heart failure) and listens to her heart (Obviously!). She also has another echo. As per usual, she lay there placid and happy, well right up until the echo (which she usually loves). Except she was getting a bit hungry today so she had a bottle while the echo was happening which is always a bit tricky.

The ECG was great, her SATs have predictably dropped into the high 80s, the doctors are still hoping this will drop further. Her respiratory rate is excellent and not at all laboured (as it had been in the past). The pulmonary band is doing its job. Great restriction of blood flow to the lungs. However, the echo showed that her VSD (Ventricular Septal Defect – basically a hole in between the right and left ventricle) has closed a little. Further restricting blood flow. This is not an ideal situation as this helps the blood flow through the heart, rather than getting ‘trapped’ in the underdeveloped side. Dr Ward does not predict that it will cause any further trouble and he’s been on the money with everything else so I trust him!

He was happy for her to stop her daily Lasix medication. Which makes me unbelievably happy. Initially he was reluctant as he didn’t want to ‘rock the boat’ and negatively affect her progress, but he said he didn’t think it was doing much at this stage. Many heart kids are on lasix as a preventative measure of stopping congestive heart failure, I imagine we will revisit this medication fairly soon.

She will also now be booked in for her first heart catheterisation. I guess there will be many of these in her life. This will happen under a light anaesthetic and will require an overnight stay at minimum, as long as there are no complications with it. Basically, they send in a little tube to have a peak around at what is going on, which helps the doctors plan for the Bi-Directional Glenn procedure, the next big operation. This heart cath will happen in the next month, I’m awaiting the pre admission information. Dr Ward predicts the Bi-Directional Glenn will occur sometime in the next 12 weeks, so it’s time to count down.

It goes without saying that each procedure in itself is very scary. I’m not sure if knowing what to expect with PICU, close obs and being on the ward is helpful, I guess ignorance is bliss at times. But knowing the procedure and how amazing the doctors are gives some amount of comfort. During the last 8 weeks it has been very easy to forget occasionally that there is anything ‘wrong’ with Chloe, we’ve spent a lot of time chasing the genetics team about the prognosis on Smith-Lemli- Optiz Syndrome as well as her feeding issues.

It would be an understatement to say that I’m nervous about the next operation. And even though at times I fully question God’s provision and plan for her life, and ours, I know that He holds her in his hands. I would like to say that my faith has not wavered at all, but that would be a lie. Though I always know deep down that God is in ultimate control and that brings comfort, or at least it should! It’s that old adage of wanting to know the plan for the future, wishing I could look a few years ahead and see that she is doing so well. As well as the good old WHY? question!

She really has had the odds stacked against her, SLO kids often have trouble with feeding orally and gaining weight, and heart kids also have trouble. Yet she has gained steadily since her operation and even is starting to wear 000! Finally! We can only continue to pray and hope that she will continue to defy the odds and do exceedingly well.

Chloe having a cuddle with Mike’s grandma on the weekend.

I don’t run marathons!

I’m not a marathon runner. Neither is Mike. Those of you who know us well know we don’t do this! I can’t think of anything worse! Running for hours to just cross a finish line? Training for months on end? Eating the right foods? Nope. No Thanks. Not interested. But kudos to those who do! Impressive work!

I’ve decided pregnancy is a marathon…and I’m allergic to it! Regardless of the problems we are facing I do not find the miracle of life fun! But it’s not long to go now.

But a marathon conjures up images in my head of endurance. We all need endurance in life at some point. Endurance brings up for me the idea of running of race and the idea that at times it will not be easy.

It makes me think of Paul’s writing in the Bible when speaks about ‘running the good race’… ‘keeping your eye on the prize’. This is where we are at. Endurance. And we’re on the home stretch for the first part of the journey. Keeping our eyes on the prize…meeting our little girl!

We had a growth scan yesterday at the Mater Hospital yesterday. I took mum because Mike was at work. I told her we are like little ‘celebrities’ there at times, there always seems to be someone new who wants to see ‘our special case’! I’m sure that’s not the case but that’s what it feels like.

So I’ve mentioned before that there are concerns about her growth. She is small. In the lowest 5th percentile especially for the long bones – arms and legs. This can sometimes be a marker for other chromosomal/genetic disorders but we have yet to see anything that points us in that direction. The doctors say as long as she tracks on at her own pace and doesn’t plateau in growth things will just continue to progress. Yesterday the scan showed that she continues to grow at her own little pace. And the doctor yesterday said he felt that she didn’t show the signs or markers anymore for dwarfism (which is one of the words that had been ‘thrown around’). Which was very good news.

Her belly is now measuring quite big, this can be a sign for gestational diabetes. So I’m being monitored for that. But I sort of made a joke that it’s a good thing – babies born with the mother having gestational diabetes tend to be bigger! Which means she might be small but a healthier weight!

The current estimated weight is 1.7kg! Tiny! If she continues at this pace we can expect and hope that she might weigh at birth around 2.5kg or even a little more, if we are being optimistic!

In two weeks time we have the ‘BIG’ meeting where decisions and plans will be made. Including a rough idea of when she will enter the world. At the moment my obstetrician thinks it will be around 39 weeks, the last week in November. They are talking induction, but we will see about that one!

So it’s really only about 7 weeks to go…or maybe less! Not long now!

 

31 Weeks now…

So it’s been about 11 weeks since the initial diagnosis. Baby Love is growing, but doctors have concerns about her small arms and small legs. Some pretty scary words have been thrown around but we’re hoping that it’s just because we are both small ourselves!

She moves around a lot and is growing at her own pace, although she still falls into the 5th percentile (the lowest) for size. I have another growth scan coming up in a week, so hopefully she is continuing to track along at a steady rate – this is all the doctors are concerned about.

So you may ask what the future looks like for a bub with this rare heart condition (I read a statistic recently that says this condition happens in about 1 in 100 000 live births). Whilst the anatomy of her heart remains the same, she won’t require immediate surgery after birth! This is great news. Doctors say we may be able to take her home until she is about 6-8 weeks old. At this point she may show signs of congestive heart failure! (They say this so casually but good grief!!!) It is then they assess and she will undergo her first open heart surgery – this will be done on a beating heart! Amazing. It’s called Pulmonary Banding and basically means that a band is put around the pulmonary artery to decrease the blood flow to the lungs. It has to be done just right.

After that…. she will undergo what is called the Fontan procedure. This involves more open heart surgeries (I think done on bypass) in the next few years of life.

It’s going to be a hard road for all of us…especially her! But we remain positive and put our faith in a God who works miracles, in whatever shape or form that comes in. We hope and pray everyday that in about 8 weeks we get to meet our baby girl on the ‘outside’ world and get to hold her and see her take her first breaths.

The Diagnosis

Well I’ve never written a blog before…. so here goes!

July 6 2012 was like most days. Except that this particular day held great excitement for both Mike and I. We were off for our 20 week scan. Today we would find out if we were having a boy or a girl. Mike was convinced it was a girl, and just to be annoying and different I was convinced it was a boy!

So off we went… 1:20pm…scan time!

Baby Love was not being cooperative, she was upside down, back to front… but the radiologist was able to tell us that we were having a girl! We were both pretty excited, it didn’t really matter to us, as long as she was healthy.

The scan seemed to be dragging on for a bit, and the radiologist said she was having trouble getting pictures and measurements of her heart. She made me get up and touch my toes (which I could still do) and after some jumping around and walking and some water, still no progress. Baby Love was not showing her heart or face to anyone! The radiologist sent us off for a walk!

We came back half an hour later, and restarted the scan. She was spending a long time on her heart. It started to dawn on us, both of us that perhaps this wasn’t a normal amount of time to spend trying to get the right pictures.

“Is there something wrong?”, I asked. She sent for the lead radiologist, who came in and started to look for herself.

Finally she said, “The heart looks hypoplastic on the right side.”

I had no idea what this meant. I’m not sure if Mike did.

We were then sent for several tertiary scans and were given a pretty serious diagnosis…

She has Tricuspid Atresia, Hypoplastic Right Heart with Ventricular Septal Defect. Her heart was far from normal. But was beating strong and loud! About 150 beats per minute.

And so begins the journey that brings me to this blog….